A Survey to Define the Toll Disbelief Takes on Fibro Patients - You Can Help

Here is an excellent way FM patients can contribute to much-needed research on the impact of “Living with Invalidation of Fibromyalgia.”

Have your fibromyalgia symptoms been invalidated by others, and if so have these attitudes affected your personal outcomes and acceptance of the illness? Caroline Kenny, a psychologist in clinical training at the National University of Ireland, Galway, has launched an international online survey to provide an educational profile of this issue. The goal is to create understanding and communicate more informed approaches for dealing with FM patients among medical professionals, social services, and family & co-workers. Following is her description of the research and a link that will take you to the survey site.

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If you are 18 or older and have been experiencing FM pain, would you like to contribute to research on the impact of living with invalidation of Fibromyalgia?

Chronic pain associated with Fibromyalgia can be a challenging experience for those who live with it. Because of the “invisibility” of their symptoms and the lack of a medical diagnosis, people with Fibromyalgia may encounter a lack of understanding, disbelief, and invalidating attitudes regarding the reality of their experience. Unfortunately, this can present an additional challenge for many people with Fibromyalgia.

The purpose of this research is to understand more about the impact on people with Fibromyalgia of having their symptoms invalidated by others - including family, work colleagues, and medical professionals. It is hoped that research like this will help to raise awareness regarding the impact of a lack of understanding of Fibromyalgia.

If you choose to complete the online survey, your participation will be invaluable in contributing to a better understanding of the extent and impact of illness invalidation experiences on people living with Fibromyalgia.

This research has been granted ethical approval by the National University of Ireland Research Ethics Committee, and a report on the study results will be made available to you through ProHealth.com in September 2011.

The survey should take between 25 and 40 minutes to complete, depending on how fast you read! The link below will provide you with further information about the research. If clicking the link does not take you directly to the online survey, you can access it by copying and pasting the link into the address bar of your web browser.

I took the survey but there were some questions that should have had an NA answer and didn't, which forces people to answer questions that may not apply. Also, there were some that really require further clarification, and the last two sets of questions were difficult to do with brain fog.